Quality of Life and Pain Experienced by Children and Adolescents With Cancer at Home Following Discharge From the Hospital.

An exploratory study was conducted to examine the quality of life and pain experienced by patients with pediatric cancer at home after discharge. Physical, cognitive, social, and emotional aspects of quality of life were measured and how these may be affected by age, sex, diagnosis, and pain status. The authors also characterized intensity, location, and quality of pain experienced. A sample of 33 patients participating in a larger study was selected on the basis of having pain on the day of discharge and having completed the Pediatric Quality of Life Inventory Generic, Cancer Module, Multidimensional Fatigue Scale, and the Adolescent Pediatric Pain Tool at home. Cancer diagnoses were leukemias/lymphomas (42.4%), brain/central nervous system tumors (27.3%), sarcomas (24.2%), or other (6.1%). More than half of patients reported pain (n=17; 51.5%). Patients with pain had more fatigue affecting the quality of life (P=0.01), and lower physical and emotional functioning, leading to lower overall health-related quality of life scores (P=0.011). Female individuals and adolescents reported worse emotional functioning (P=0.02 and P=0.05, respectively). Physical, cognitive, and social functioning were lowest among patients diagnosed with sarcomas (P=0.00, P=0.01, and P=0.04, respectively). It is important to understand the symptom experience of patients at home as a first step in moving towards optimal discharge teaching and treatment.

Pain, sleep patterns and health-related quality of life in paediatric patients with cancer.

PURPOSE: To compare sleep and health-related quality of life (HRQOL) in children and adolescents with cancer who had pain, with those who had no pain during hospitalisation. METHOD: A prospective comparative study was used to collect data from paediatric oncology units in three countries (Portugal, Brazil, USA). Participants (n = 118; 8-18 years) completed the Quality of Life Inventory (PedsQL) Cancer module, which includes a pain subscale, and wore a wrist actigraph for at least 72 hr. RESULTS: Almost half of the participants (48.3%) reported having pain. Sleep patterns were not affected by pain. Girls, adolescents and patients diagnosed with leukaemia/lymphoma who reported pain, had significantly lower HRQOL scores. Low sleep duration and HRQOL were found, irrespectively of pain status. CONCLUSIONS: The low sleep duration and HRQOL score in children and adolescents with cancer highlight the importance of physical and psychosocial nursing interventions during hospitalisation. The mediating effect of gender, age and diagnoses on the relation between pain and HRQOL needs to be further understood.

Multi-level Intervention Program - A Quality Improvement Initiative to Decrease Central Line-Associated Bloodstream Infections in the Pediatric Acute and Hematology/Oncology Units.

INTRODUCTION: Central Venous Catheters (CVCs) are placed in pediatric patients that require frequent and/or long-term access for intravenous treatments and increase the risk for Central line-associated bloodstream infections (CLABSIs). The specific aims of the study were to evaluate adherence to the intervention components and rates of Central Line Associated Bloodstream Infections (CLABSIs) over five years. METHODS: Implementation occurred on the acute care and hematology-oncology pediatric units of a quaternary health care setting in Southern California. Adherence rates were quantified using a CVC audit sheet and CLABSI rates were obtained quarterly before, and at year 1, 2, 3, 4, 5 of implementation. RESULTS: CLABSI rates for both pediatric units decreased over the five-year period. Adherence rates were 90% to 100% on the different features of the intervention; the lowest was adherence to Patient Protective Equipment (PPE). A total of 41 incidents of hospital-acquired CLABSIs were reported the year prior to the Bug Buster Committee, which decreased steadily to 9 incidents after implementation. The quarterly CLABSI rates in the Pediatric Acute Care ranged from 2.8 to 6.6/1,000 catheter days and in Pediatric Hematology-Oncology from 2.1 to 4.3/1,000 catheter days the year prior to implementation. CONCLUSIONS: While adherence for staff remains high, parent/family adherence was low. We recommend including in the multi-level intervention, procedures targeting parent adherence such as patient education handouts, reviewing content on admission, placing signs on doors indicating PPE requirements, and promptly providing PPE to non-adherent family members.

Eating Behaviors, Weight Bias, and Psychological Functioning in Multi-ethnic Low-income Adolescents.

PURPOSE: The purposes of this study were to: 1) Describe the incidence of disordered eating, weight bias, body dissatisfaction, and psychological distress, 2) Examine the relationship between sociodemographic variables (gender, ethnicity, and income) and disordered eating, weight bias, body dissatisfaction, and psychological distress in a sample of low-income adolescents. DESIGN AND METHODS: A cross-sectional study was conducted with 105 adolescents from low-income neighborhoods. Participants completed self-report questionnaires to assess eating behaviors, weight bias, body dissatisfaction, and psychological functioning. Height and weight were measured, and information on household income was collected. RESULTS: The participant's mean age was 16.31 (SD=2.8) years, 66% female, 47% Hispanic, and 46% African American. The mean annual income was $17,018 (SD=11,355). Twenty-eight percent self-reported having some form of disordered eating, and 15% reported an eating disorder. The group with eating disorder reported the highest levels of weight bias (M=93.4, SD=109.6), body dissatisfaction (M=94.6, SD=47.6), and psychological distress (M=1.4, SD=0.97). CONCLUSION: This study found a high prevalence of eating disorders with eating disorder participants experiencing the highest levels of weight bias and psychological distress. Future studies are needed to identify and evaluate community and school-based interventions to minimize weight bias and disordered eating. PRACTICE IMPLICATIONS: Nurses are at the forefront of healthcare and should collaborate with educators, school counselors, administrators, coaches, parents, and students, to address weight bias and disordered eating in schools by implementing school-based curriculum and policies.

Simvastatin reduces vaso-occlusive pain in sickle cell anaemia: a pilot efficacy trial.

Sickle cell anaemia (SCA) is a progressive vascular disease characterized by episodic vaso-occlusive pain. Despite the broad impact of inflammation on acute and chronic clinical manifestations of SCA, no directed anti-inflammatory therapies currently exist. Statins are cholesterol-lowering agents shown to confer protection from vascular injury by suppressing inflammation. We previously documented a reduction in soluble biomarkers of inflammation in patients with sickle cell disease treated with simvastatin. To determine the potential clinical efficacy of simvastatin, we treated 19 SCA patients with single daily dose simvastatin for 3 months and assessed changes from baseline in the frequency and intensity of diary-reported pain and levels of circulating nitric oxide metabolites (NOx), high sensitivity C-reactive protein (hs-CRP), vascular cell adhesion molecule 1 (VCAM-1), intercellular adhesion molecule 1 (ICAM-1), ICAM-3, E-selectin, and vascular endothelial growth factor (VEGF). Treatment with simvastatin resulted in a significant reduction in the frequency of pain (P = 0·0003), oral analgesic use (P = 0·003) and circulating hs-CRP (P = 0·003), soluble (s)E-selectin (P = 0·01), sICAM-1 (P = 0·02), sICAM-3 (P = 0·02) and sVEGF (P = 0·01). Simvastatin had no effect on pain intensity or levels of NOx, sP-selectin and sVCAM-1. The observed reductions in pain rate and markers of inflammation were greatest in subjects receiving hydroxycarbamide (HC), suggesting a synergistic effect of simvastatin. These results provide preliminary clinical data to support a larger trial of simvastatin in SCA.

Barriers to care and quality of primary care services in children with sickle cell disease.

AIMS: The aims of this study were: to (1) identify barriers to care in children with sickle cell disease; (2) examine the quality of primary care services received by these children and (3) examine the relationship between barriers to care and quality of primary care services in children with sickle cell disease. BACKGROUND: Effective management in children with sickle cell disease requires early access to a comprehensive range of preventive screenings, urgent care treatments for vaso-occlusive pain crisis and ongoing prophylactic treatments. DESIGN: A cross-sectional survey of parents of children with sickle cell disease was conducted between April-September 2011. METHODS: Parents of children with sickle cell disease completed the Barriers to Care Questionnaire and Parent's Perceptions of Primary Care. RESULTS: Parents of children with sickle cell disease (n = 38) reported health system barriers such as inability to contact doctors or clinics, extended wait times and inconvenient clinic hours. Some barriers were reported more frequently among children with concurrent sickle cell disease and asthma, compared with those children without a concurrent asthma condition. Parents who reported more barriers were least likely to perceive their care as accessible, comprehensive and coordinated. CONCLUSIONS: Minimizing healthcare barriers may improve the quality of primary care services received by children with sickle cell disease and consequently prevent complications associated with sickle cell disease. IMPLICATIONS FOR NURSING PRACTICE: Nurses and other care providers need to identify healthcare barriers, so that access, coordination, comprehensiveness and overall quality of primary care services may be improved in children with sickle cell disease.

Depression, Anxiety, and Quality of Life In Children and Adolescents With Sickle Cell Disease.

The relationships among depression, anxiety, and quality of life were tested, as were the effects of age, gender, and pain frequency on these variables in children (n = 44) and adolescents (n = 31) with sickle cell disease. Participants completed the Revised Child Anxiety and Depression Scale (ROADS) and the Pediatric Quality of Life (PedQL Generic Model). The mean and standard deviation for summary RCADS scores for the majority of participants were below the clinical thresholds of T < 65, indicating low risk for depression (n = 65; 89.3%) and anxiety (n = 70; 93.3%). The subscale scores for the different dimensions of QOL health were a) psychosocial (73.3 ± 15.9), b) emotional (75.0 ± 20.7), c) social (80.8 ± 19.1), d) school functioning (64.0 ≥ 19.8), and e) physical (77.4 ± 17.4). Significant negative correlations were found between mean total quality of life scores and symptoms of a) general anxiety (r = -0.51, p < 0.0001), b) depression (r = -0.66, p < 0.0001), c) obsessive compulsive (r = -0.53, p < 0.0001), d) panic (r = -0.60, p < 0.0001), and e) social phobia (r = -0.57, p < 0.0001). Age and gender did not have significant effects on risk for depression and anxiety or poor QOL. Pain frequency also did not have significant effects on the risk for depression and anxiety. Findings suggest that health care providers need to screen for anxiety and depression, and make referrals for early interventions to improve quality of life and promote school function in youth with sickle cell disease.

Sensory and Thermal Quantitative Testing in Children With Sickle Cell Disease.

Very little is known about pain processing in sickle cell disease (SCD). We examined the mechanical and thermal sensory patterns in children with SCD. Children ages 10 to 17 years (n = 48; mean 13.7 ± 2.0 y; 22 females) participated in quantitative sensory testing (QST) procedures and completed a quality of life (PedsQL) and anxiety and depression scale (RCADS). Thirteen children showed evidence of abnormal pain processing, indicated by decreased sensitivity to heat or cold sensations (hypoesthesia), and pain experienced with nonpainful stimuli (allodynia). Pain ratings associated with cold and warm sensations were significantly higher in the subgroup with abnormal QST compared with the 35 SCD children with normal QST (P = 0.01 and P < 0.0001, respectively). The presence of hypoesthesia and allodynia in children with SCD may represent abnormal changes in the peripheral and central nervous system. Clinicians need to be aware that sickle cell pain may not only be inflammatory or ischemic secondary to vasoocclusion and hypoxia, but may also be neuropathic secondary to nerve injury or nerve dysfunction. Neuropathic pain in SCD may be the result of tissue damage after vaso-occlusion in neural tissues, whether peripherally or centrally. Future studies are needed to determine the presence of neuropathic pain in children with SCD.

What Is It Like to Be a Child with Type 1 Diabetes Mellitus?

Diabetes mellitus is a complex disease that requires significant changes in lifestyle upon diagnosis, which may be difficult for children because of differences in growth and developmental levels. The purpose of this study was to increase our understanding of "what it is like" to be a child with type 1 diabetes mellitus and explore factors that interfere with disease management. Qualitative interviews using puppets constructed by children 7 to 12 years of age were conducted during clinic visits. The interviewer engaged in conversations to examine thoughts, feelings, and daily experiences with the management of diabetes. Results indicated that the children (N = 19) expressed emotions and psychosocial factors that may interfere with their ability to manage diabetes. These included conflicting desires, insecurity, fear, pain, inadequate knowledge, worry about long-term effects, prejudice, rejection, and shame. Findings suggest that during patient teaching at the time of diagnoses and follow-up clinic visits, clinicians address not only the physical aspects of the disease (blood sugar monitoring, insulin administration, diet and exercise management) but also examine emotional and psychosocial needs, and discuss strategies that will promote positive coping as children live with the complexities of growing up with diabetes.

Structural brain alterations in children an average of 5 years after surgery and chemotherapy for brain tumors.

Young children with brain tumors are often treated with high-dose chemotherapy after surgery to avoid brain tissue injury associated with irradiation. The effects of systemic chemotherapy on healthy brain tissue in this population, however, are unclear. Our objective was to compare gray and white matter integrity using MRI procedures in children with brain tumors (n = 7, mean age 8.3 years), treated with surgery and high-dose chemotherapy followed by autologous hematopoietic cell rescue (AuHCR) an average of 5.4 years earlier, to age- and gender-matched healthy controls (n = 9, mean age 9.3 years). Diffusion tensor imaging data were collected to evaluate tissue integrity throughout the brain, as measured by mean diffusivity (MD), a marker of glial, neuronal, and axonal status, and fractional anisotropy (FA), an index of axonal health. Individual MD and FA maps were calculated, normalized, smoothed, and compared between groups using analysis of covariance, with age and sex as covariates. Higher MD values, indicative of injury, emerged in patients compared with controls (p < .05, corrected for multiple comparisons), and were especially apparent in the central thalamus, external capsule, putamen, globus pallidus and pons. Reduced FA values in some regions did not reach significance after correction for multiple comparisons. Children treated with surgery and high-dose chemotherapy with AuHCR for brain tumors an average of 5.4 years earlier show alterations in white and gray matter in multiple brain areas distant from the tumor site, raising the possibility for long-term consequences of the tumor or treatment.

Adolescent pediatric pain tool for multidimensional measurement of pain in children and adolescents.

Very few multidimensional tools are available for measurement of pain in children and adolescents. We critically reviewed the scientific literature to examine the psychometrics and utility of the Adolescent Pediatric Pain Tool (APPT), a multidimensional self-report tool that evaluates the intensity, location, and quality (including affective, evaluative, sensory, and temporal) dimensions of pain. The APPT is available in English and Spanish for children and adolescents, and was modeled after the McGill Pain Questionnaire in adults. We found good evidence for construct validity, reliability, and sensitivity of the APPT for the measurement of pediatric pain. The APPT was used to measure pain in children with different conditions, such as cancer, sickle cell disease, orthopedic, traumatic injuries, and allergy testing. Although the APPT was designed to assess the multiple dimensions of pain, the majority of the reports included results only for the intensity ratings. Unlike the numerical and pediatric faces rating scales, which are widely used in clinical practice and research, the APPT is not limited to the single dimension of pain intensity. It measures multiple dimensions, and may be able to discriminate between nociceptive and neuropathic pain. The APPT is one of a few multidimensional pain measures that can help to advance the science of pediatric pain and its management. When the APPT is used in practice or research, the multiple dimensions of pain may be characterized and compared in different painful conditions. It may guide the use of multimodal interventions in children and adolescents with a variety of pain conditions.

Factors associated with health-related quality of life in children with sickle cell disease.

BACKGROUND: Sickle cell disease is an inherited haematological condition with life-threatening consequences. It can affect all aspects of the lives of children with the condition, including biopsychosocial and cognitive aspects. These children tend to have a low health-related quality of life (HRQoL). AIM: To identify factors associated with HRQoL in Omani children with sickle cell disease. METHOD: The study was a secondary analysis of data from a randomised controlled trial conducted with 72 parent-and-child dyads who were recruited from two tertiary hospitals in Oman. The aim of the original study was to examine the effects of an educational programme on the knowledge and self-efficacy of parents of children with sickle cell disease. As part of that study, parents and children completed two questionnaires on HRQoL, one generic and one specific to sickle cell disease. RESULTS: Parents' knowledge of sickle cell disease, parents' self-efficacy in managing their child's symptoms, parents' age, children's age and treatment with hydroxyurea were found to affect children's HRQoL. CONCLUSION: Healthcare providers need to include biopsychosocial and cognitive aspects of HRQoL in their assessments of children with sickle cell disease. Programmes designed to enhance parents' and children's knowledge and self-efficacy, as well as measures designed to ensure that children receive treatment with hydroxyurea, are likely to improve the HRQoL of children with sickle cell disease.

Usability testing of a Smartphone for accessing a web-based e-diary for self-monitoring of pain and symptoms in sickle cell disease.

We examined the usability of smartphones for accessing a web-based e-Diary for self-monitoring symptoms in children and adolescents with sickle cell disease (SCD). One group of participants (n = 10; mean age, 13.1 ± 2.4 y; 5 M; 5 F) responded to questions using precompleted paper-based measures. A second group (n = 21; mean age, 13.4 ± 2.4 y; 10 M; 11 F) responded based on pain and symptoms they experienced over the previous 12 hours. The e-Diary was completed with at least 80% accuracy when compared to paper-based measures. Symptoms experienced over the previous 12 hours included feeling tired (33.3%), headache (28.6%), coughing (23.8%), lack of energy/fatigue (19.0%), yellowing of the eyes (19.0%), pallor (19.0%), irritability (19.0%), stiffness in joints (19.0%), general weakness (14.3%), and pain (14.3%), rating on average as 2.0 ± 1.7 (on 0 to 10 scale). Overall, sleep was good (8.1 ± 1.4 on the 0 to 10 scale). In conclusion, children with SCD were able to use smartphones to access a web-based e-Diary for reporting pain and symptoms. Smartphones may improve self-reporting of symptoms and communication between patients and their health care providers, who may consequently be able to improve pain and symptom management in children and adolescents with SCD in a timely manner.

Health status, healthcare, and access in children with long-term medication use and difficulties with emotion, concentration, and behavior.

PROBLEM: Children with chronic conditions often have difficulties with emotions, concentration, and behaviors (ECB) and are not recognized and treated adequately. In this paper, long-term medication use (LTM) was adopted as a proxy for chronic illness due to the lack of consistent and standardized diagnostic criteria for chronic illnesses in children. METHODS: Children (8-12 years) were selected from the California Health Interview Survey (2017) based on: (1) households with children (<12 years), (2) parent/adult caregivers report about child's health indicating "yes" to, (3) "does your child require prescription medicine for a health condition that has lasted or is expected to last at least 12 months or more," and (4) "difficulties with ECB in past 6 months." FINDINGS: A total of 1600 children were included by the CHIS data set, and children whose parental report had met the selection criteria were children with LTM (n = 144; 7.4 ± 2.9 years), ECB (n = 233; 8.16 ± 2.14), and both LTM + ECB (n = 62; 8.61 ± 1.81). Children with LTM+ ECB were Caucasian (56.4%), Hispanic (19.3%), and males (64.5%). Children with both LTM + ECB had two to three (33.87%) or at least four (53.2%) physician visits, and/or receiving special therapy (45.1%). Children with LTM had prescription delays (n = 144; 5.6%) and were not able to get medical care due to lack of insurance (n = 144; 6.9%). The majority of the children with LTM (54.2%) and LTM + ECB (43.5%) had parental employment-based insurance. More children that have both LTM and ECB (48.4%) than children with LTM, No ECB (32.9%) were on Medi-Cal/Medicaid. CONCLUSION: Children with LTM need further evaluation for difficulties with ECB. Future studies are required to examine health status, healthcare use, and access for children with LTM and ECB.

Factors associated with young adult engagement with a web-based sickle cell reproductive health intervention.

Objective: To determine the factors predicting the engagement of young adults who have sickle cell disease (SCD) or sickle cell trait (SCT) with an online reproductive health education intervention and engagement effects on knowledge. Methods: The cross-sectional study included 167 participants who completed the web-based intervention either face-to-face (F2F) or online delivery (OL). Measures include: time used relative to length of the intervention narration and media (engagement) and the SCKnowIQ questionnaire. Ordinal regression was conducted. Results: The sample mean age was 26-years (SD=5), 68% were female, 54% had SCD, and 68% were in the F2F group. Adjusting for age, partner sickle cell status, marital status, and education, participants who were female (p=.003), had SCD (p=.018), or had F2F delivery (p < .001) were more likely to spend more time on the intervention. Adjusting for baseline knowledge and modality, more time spent on the intervention was associated with higher posttest knowledge (p=.006). Conclusions: Future studies are necessary to understand reasons underpinning engagement and to investigate other unmeasured factors, such as intervention interactivity elements, that could also be associated with engagement. Innovation: This study of young adults with SCD or SCT provides much needed insight about their engagement with online reproductive health education.

Parental psychosocial needs in Brazilian paediatric intensive care units.

BACKGROUND: Having children admitted in the intensive care unit is a demanding experience for parents. They encounter several difficulties during this process, and it is important to properly identify their psychosocial needs for the health team to address appropriately. OBJECTIVE: The aim of the study is to identify the psychosocial needs encountered by parents of children in pediatric intensive care units in Brazil. METHODS: A descriptive study with a qualitative approach was used to increase understanding of psychosocial experiences of parents. Individual semi-structured interviews were conducted with 11 parents of hospitalized children in pediatric intensive care units in Brazil. Thematic analysis was used to analyze the data. The university ethics review committee approved the research protocol. All parents were informed on study details and provided written consent prior to the interview. RESULTS: Four themes were constructed: 1) Support from family and peers; 2) Support from the healthcare team; 3) Parental role; and 4) Emotional recovery. Parents expressed diverse psychosocial needs based on family and peer social support, child's clinical condition, as well as the structure, norms, and routines of health care teams during hospitalization. CONCLUSIONS: The findings highlight the importance of nursing assessment of psychosocial experiences encountered by parents of children in pediatric intensive care units, which will guide planning of individualized interventions and to increase family-centered care in pediatric intensive care units.

Impact of childhood cancer on parents' relationships: an integrative review.

PURPOSE: The diagnosis of cancer and the treatment decisions associated with it may cause uncertainty, stress, and anxiety among parents. Emotional tensions can affect parents' relationships during the trajectory of the child's cancer illness. We conducted an integrative review to examine the evidence related to the effects of childhood cancer on parents' relationships. METHODS: An integrative literature search of studies published between 1997 and 2009 was conducted in the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Psychology Information (PsycINFO), PubMed, Scopus, CUIDEN, and Latin American and Caribbean Health Science Literature (LILACS). The key words used were neoplasms, child, marriage, spouses, family relations, and nursing. Articles were reviewed if the (a) topic addressed parents' relationships during childhood cancer; (b) participants were mothers, fathers, or both; (c) design was either qualitative or quantitative; (d) language was English, Portuguese, or Spanish; (e) date of publication was between January 1997 and October 2009; and (f) abstract was available. RESULTS: Fourteen articles met the search criteria and were reviewed using Cooper's framework for integrative reviews. Four themes emerged: (a) changes in the parents' relationship during the trajectory of the child's illness; (b) difficulty in communication between couples; (c) gender differences in parental stress and coping; and (d) role changes. CONCLUSIONS AND IMPLICATIONS: Findings revealed positive and negative changes in parents' relationships, communication, stress, and roles. Nurses need to assess the impact of cancer diagnosis and treatments on parent relationships, offer support and encouragement, and allow expression of feelings. Future research is needed to develop and test interventions that increase parents' potentials and strengthen relationships during the challenging trajectory of their children's cancer and treatment. CLINICAL RELEVANCE: The multiple sources of stress and uncertainty associated with a child's cancer diagnosis and treatment affect parents' relationships. Difficulties in communication appear frequently in parents' relationship. Our findings may guide healthcare professionals in identifying parents at risk for developing conflicts, communication problems, and lack of alignment between parents that could interfere with providing optimal care for their child with cancer. Healthcare professionals may promote dialogue and encourage parents to express their feelings, seek mutual support, and establish a partnership in dealing with the child's illness.

Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity.

INTRODUCTION: Children with chronic illnesses and medical complexity (CIMC) require frequent health-care use, thereby increasing medical care costs. We evaluated parent-child perceptions of self-management, self-efficacy, and health-related quality of life (HRQOL) in children with CIMC. METHOD: Parent-children pairs (n = 32) completed three measures before discharge from the hospital (Patient Activation Measure, Self-Efficacy Scale, and Acute Care-Pediatric Quality of Life for Children 8-12 and 13-17 years). RESULTS: Parents (56.3%) and children (40.6%) reported moderate levels of self-management. HRQOL was correlated with both self-management (r = .441, p = .12) and self-efficacy (r = .464, p = .008). At least 25% to 50% reported low PedsQL subscale scores (< 70), which indicate problems with physical, emotional, social, and mental domains. DISCUSSION: Our findings support the assessment of not only physical but also mental, emotional, and social needs in children with CIMC. We recommend development and testing strategies promoting self-management and self-efficacy to maximize HRQOL and improve health outcomes in children with CIMC.

Pain Experience, Physical Function, Pain Coping, and Catastrophizing in Children With Sickle Cell Disease Who Had Normal and Abnormal Sensory Patterns.

CONTEXT: Sickle cell disease (SCD) is associated with recurrent pain that could lead to abnormal sensory patterns (ASPs). OBJECTIVES: The purpose of this study is to compare children with SCD who had normal sensory patterns (NSPs) and ASPs in pain experience, physical function, pain coping, and pain catastrophizing. METHODS: Children with quantitative sensory testing data were selected from a larger study that examined pain and symptoms in children with SCD. Comparisons were made between children with NSP (n = 35; 13.9 ± 1.9 years) and ASP (n = 13; 12.8 ± 1.9 years). Children completed the Adolescent Pediatric Pain Tool, Functional Disability Inventory, Pain Coping Questionnaire, and Pain Catastrophizing Scale. RESULTS: No significant differences were found in pain intensity (2.9 ± 3.0 vs. 2.6 ± 2.8 on 0-10 Visual Analogue Scale) between the NSP and ASP, respectively. The most common marked pain sites for both groups were lower extremities (22.9%), head and neck (20.8%), and upper extremities (20.8%). Functional Disability Inventory scores were significantly worse in ASP (38.5%) compared with NSP (11.4%). The ASP group had significantly worse scores in emotion-focused pain coping subscales. CONCLUSION: Children with SCD with ASP had worse functional disability, were expressing more affective pain quality, and had emotion-focused pain coping compared with NSP. Future studies are needed to examine the effectiveness of physical activities on the physical function as well as psychosocial interventions such as peer support and creative arts expression to minimize development of ASP in children with SCD.

Pain experience in hospitalized adults with sickle cell disease.

Adult patients with sickle cell disease often report high pain intensity ratings during hospitalization. However, no evidence of upward titration in analgesics was found particularly during prolonged episodes. Development of algorithms to facilitate decisions regarding titration of medications is recommended.